Living a long and happy life in spite of having ALS/Lou Gehrig's disease

Month: May 2017

If you are living with a disease like ALS, MS, or any other illness which affects your muscles, you may, like me, at some point end up using a wheelchair. You also may not have use of your arms. Sure, it sucks, but why dwell on it? Look on the bright side of life (said in your best Monty Python British accent).

If you are stuck in a wheelchair you can stroll through the mall shopping for hours without getting tired of walking. And, if your arms are weak, no more clapping required, no matter what event you are attending. Or maybe technically you could clap, but you are just too tired to make the effort. That’s okay, don’t do it. And, no more shaking hands with everyone. Think of all the germs you will avoid! Don’t worry about explaining why you aren’t shaking someone’s hand when they offer their hand to greet you, just smile and let them figure out what to do! I know, it’s a bit rude, but if you are like me, and your voice is weak, it’s really too hard to explain anyway.

Sometimes your predicament will allow for some really awesome treatment. Like your semi crappy concert tickets may be exchanged for some really awesome front row seats. And, meet and greet tickets may be thrown in for you to meet one of your favorite musicians. Or, upon seeing the disregard shown to you in a wheelchair at a concert, a security guard may make it his duty to keep you close to the stage, and other concert goers far from you and whoever you are with. A certain Mr. Rick Springfield may get up close to you, even standing on the arms of your wheelchair as he sings! But, I digress.

The point is, remember to see the good and not just the bad in what you are going through. Always look on the bright side of life, and don’t forget the Monty Python British accent.

One warm day, my daughters took me to Applebee’s for lunch. We got there early, around 11:30. When the waitress came to take our drink order, I ordered one of the mixed drinks (with alcohol) off of their little drinks and desserts menu. The waitress looked at her watch and made some comment about me starting the drinks early and something about it not even being noon yet. Maybe I should have told her that I don’t often leave my house and go out to lunch, so when I do, I try to enjoy myself and that I enjoy having a drink that I wouldn’t normally have at home. Maybe I should have made a comment about the time when she brought our drinks, because it was way past noon before that happened. Not only was I not driving , but I was not even walking! I later made a comment with my tip. Why does she think it’s wrong to drink before noon? Why can’t I wear white after Labor Day? Why don’t people eat seafood at breakfast time or have pancakes for dinner? Why is it weird to like dandelions in your yard? Who made up all these rules and standards of behavior? No wonder little kids are so happy, they don’t know all the rules yet. The older we get, the less happy we seem to be. Maybe it’s the whole terminal illness thing. You know that, “I don’t know how long I will be here so I should make the most of every day ” thing, but it just seems to me that there are too many silly guidelines someone, somewhere decided we should follow. I seem to care less and less about such things as time goes on. I care less about so many things, including those things that often pop up in the gossip category. So what if the neighbors granddaughter is unexpectedly expecting? She will figure things out. No, I can’t believe how many people go to the store dressed in whatever they’ve slept in, but that’s their choice. If they want to look ridiculous, that makes my shopping trip that much more entertaining. So what if your kid sucks at Algebra! If they aren’t good at math, help them find what they are good at. I find myself stressing less and less, and rarely worrying about anything. I must say, life is much more enjoyable this way. ALS is kind of like a gigantic hard to swallow, chill pill. It is hard to swallow/accept, but once you do, you (or at least I) chill out and quit worrying about all those things that once seemed so important. Even those problems or situations which seemed overwhelming suddenly aren’t so impossible. If at all possible, I recommend that you try to chill out a bit even if you aren’t dealing with a serious illness. Who knows, that might be just what you need to prevent an illness from arising. If you find that you need a little help getting your “chill” on, check out this video of Willie Nelson. Because, is there anyone on Earth who is more chill than Willie?

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